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Monday, February 8, 2016

Jill Goes to DC

Jill Goes to Washington DC

I am in DC this week to advocate for migraine research with our elected officials.  I will speak to Senators Debbie Stabenow (D-MI) and Gary Peters (D-MI), as well as several legislators and their representatives.

Here are my thoughts so far:

Hello Elected Official.

I am a migraineur. My journey with migraine began at age 32. I began having regular migraines at age 45, and started on preventive therapy which helped the frequency of the migraines, but had nasty side effects.  I began having more than 25 days of migraine in 2006.  I gave up my work, my hopes, my dreams, and much of my time with family and friends.  I was never able to reach my full potential.  Even now, with migraines "only" 8 days per month, I also suffer from the side effects of the many drugs I take to prevent them.   None of these drugs were created specifically to treat migraine.  

This is not just my story.  It is the story of 36 million other Americans.  

Migraine is an inherited condition.  I “caught” it from my mom and my paternal grandmother.  There is no cure for migraine, and NO drugs have yet been approved to prevent its attacks.  

Head pain is but just one symptom.  It is more than a headache. It is sensitivity to light and sound; nausea and vomiting; smelling things that aren't there, sensitivity to odors, brain fog, and dizziness. Sometimes, I have a migraine with no head pain, just dizziness, visual disturbances, and cognitive problems. 

I come here today to ask you to consider increasing the funding for the research of migraine, and the development of treatments for this disease.  

Thank you. 

Other Thoughts: 

  •  Imagine how it would feel knowing that you had the potential to be a highly functioning person, but that potential was unrealized because of a disease suffered by you and 36 million other Americans. 
  •  Imagine being a wife/mother/co-worker/friend who continually lets people down because she is in bed, disabled with this disease. 
  •  Now, imagine feeling abandoned by your government because the funding for research on this disease is less than 1% of the NIH budget.  
What is this disease?
  • Migraine is among the 12 most disabling conditions; even more disabling than MS or quadriplegia, costing over $31 BILLION (indirect/indirect cost). 
  • Migraine affects 25% of women in their most productive years, and 19% of veterans.
  • Four percent of migraineurs spend over 15 days per month with migraine symptoms and its related co-morbid conditions, including: heart disease, stroke, fibromyalgia, and depression. 
NO medicines have been approved specifically for the prevention of migraines.